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Waiting on Diagnoses.... Confused

Discussion in 'Not Diagnosed Yet?' started by TracyAnn Schuur, Mar 11, 2017.

  1. TracyAnn Schuur

    TracyAnn Schuur New Member

    Hi There - I am really new to forums so please bear with me!

    I am suffering 25/29 of the major symptoms of Lupus according to http://www.lupus.org/ , Mayo Clinic and http://www.lupuscanada.org/. I have been struggling with this for almost 2 years with no firm diagnoses. I have had extensive testing done that is all pretty inconclusive.

    Does anyone have any thoughts, comments or experience with a negative ANA and a positive Anti-SM? Also exceedingly high metanephrines, cognitive impairment, optical inflammation and considerable worsening sight, fever of 101ish +/- with no infection, autonomic and peripheral neuropathy, etc. etc. etc. - I just need an answer!

    I am so confused and frustrated! I am no longer able to drive or work, take the same care of my family as previously, and my disability benefits have recently been cancelled due to no formal diagnoses (which I am in the process of appealing).

    Today I had much much much more lab work done (blood and urine) - earlier this week a Petscan was completed, one set of imaging for my body and one for my brain.

    Why is diagnosing so difficult! My CNS, PNS and ANS are all being affected, as is my sight, cognitive ability, hair, skin and more. I have severe mottling on various areas of my body too. I am only 40 and want to be able to get ahead of whatever this is. I believe it to be Lupus because of the multitude of symptoms as well as personal family history with Lupus. Genetically speaking, it should not be a shock.

    Thoughts, comments, experiences or advice?

    Thanks in advance :)
  2. debatat

    debatat Moderator

    I understand your frustration, however if they are doing a petscan then it sounds as though someone is taking looking into your symptoms. If it affects your skin, and you get rashes have you tried swwing a dermy? Some memvers have been diagnosed that way.
  3. mark176

    mark176 Active Member


    My ANA is negative and i had same problem. All other bloods were also negative.

    A lot of it depends on the Rheumy u get. Mine looks at the wider picture and has an open mind. Although i happy to share his name, im london based an you are a long way away.

    I saw 5 rheumatologist in total. 4 were going to sweep me under the carpet. I even suggested that i need to see a psychiatrist!

    I did follow his advice and i also have mild aspergers. Probably why i was so determined to get to bottom of problems!

    Kind regards
  4. TracyAnn Schuur

    TracyAnn Schuur New Member

    Wish me luck - tomorrow I see my neurologist for PetScan results!
  5. debatat

    debatat Moderator

    Hope all goes well.
  6. lazylegs

    lazylegs Moderator

    Good luck TracyAnn.
  7. TracyAnn Schuur

    TracyAnn Schuur New Member

    If am so frustrated. I saw the neurologist today and the PetScan was normal which is good as they were looking for cancer. He essentially told me that my body is sound neurologically so there is nothing further he can do for me. Every doctor and specialist can see and record and document all of my symptoms, but because my neurosis good, my heart is strong, my kidneys are functioning well - there isn't a thing that any of them can do aside from treating the symptoms. They all acknowledge that the symptoms are there and real, yet no one can diagnose! I am stumped as to where to go from here. I am on a wait list for an auto immune lab for testing individual function but in the meantime, I am at a point of absolute despair! Is there something I am missing in the search for diagnoses? Does anyone have any suggestions?
  8. x_claire_x

    x_claire_x Moderator

    Hello... I am wondering about Debatat's last suggestion, if you are having the mottled/rashy skin a Dermatologist may be able to diagnose on biopsy ?

    The Drs can diagnose on Symptoms alone without positive bloods /tests etc.....so if you have as many symptoms as you have written in the initial post I don't understand why there can't be a diagnose....25/29 is pretty high....although I only am familiar with the 11 symptoms that appear on this site.

    Hope you can get some answers even if it isn't autoimmune so that you can get treated and resume a more normal life :0((
  9. TracyAnn Schuur

    TracyAnn Schuur New Member

    I have not been referred to a rheumy or a derm. but will certainly be asking about it at my next appt. I have seen internist, cardio, ortho, neuro, physio, massage, accu, Gunn IMS, Chrio, back surgeon, optometrist. Each one just points me back to my GP as they can see clinically the symptoms and issues but are unable to "diagnose" i.e. My heart is fine though a halter monitor shows severe palpitations, tachycardia and ST depressions. No heart disease and no damage to the heart itself though so signal must be coming from elsewhere. Recordable problems but cardio is unable to diagnose or offer solution.
  10. lazylegs

    lazylegs Moderator

    How is your thyroid? It can cause heart type issues along with a host of other symptoms.

    Most GP's don't know enough about autoimmune diseases to diagnose them. Since you have a rash a dermatologist might be able to help but I would still advise seeing a rheumatologist. Between the two maybe you will get some answers.

    Take care,
    x_claire_x likes this.
  11. TracyAnn Schuur

    TracyAnn Schuur New Member

    Hi Lazylegs,

    I have had my thyroid checked and it is all good. I see my GP on the 27th and will be asking for referrals to a rheumy and a dermatologist then. It's just been a very long and tough 21 months! June will be my 2 year anniversary of when "normal" walked out the door!

    Thank you for your suggestions though. The more I talk with other people, the less alone I feel. And good ideas come from merging of minds!

    TracyAnn Schuur
  12. Jolinda Stephens

    Jolinda Stephens New Member

    Hi TracyAnn,
    I think only a rheumatologist can diagnose lupus or most other autoimmune diseases. If you require a referral and your primary care doctor won't give you one, then change doctors.



    Sent from my Nexus 5X using Tapatalk
  13. x_claire_x

    x_claire_x Moderator

    A dermatologist can also diagnose.........just for info................Claire
  14. kate9382

    kate9382 New Member

    I had a negative ANA and most lupus symptoms including a molar rash. Long story but after many doctors, tests, lupus symptoms and stress it turned out I had a mosquito born virus called Barmah Forest. I did have a severe reaction and it caused an auto immune reaction. It lasted about a year. The first 6 months being the worst. Although my issue is an Australian issue, similar mosquito virus's exist in other counties e.g. Fiji. Have you travelled or do you have any local issues like this. Seriously they symptoms mirror lupus to a very large extent...accept the ANA.

    Sent from my iPhone using Tapatalk

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